How is Matthew?

We are often asked: “How is Matthew doing?” Here is our answer today:

Matthew has been congested for the past 2 weeks. We aren’t all that surprised given he lives with two preschool aged petri-dishes. I took him to the pediatrician last week to check him out. I felt a little silly taking him, as it’s just congestion, but I was worried that it would be different since he’s unique. Dr. Bel let me know …it is just congestion. He’s going to get the typical childhood yuck. So, we are flushing his nose with saline mist, keeping him elevated, using the nasal aspirator, etc. Most of the time he doesn’t seem too bothered by the congestion, but sounds a bit like baby Darth Vader.

Other than that, Matthew is doing well. He’s become more proficient at eating. He takes about 2 ½ ounces in about 30 minutes, though he still leaks a bit out the side of his mouth onto a towel. This is a huge improvement in the past 6 weeks. Matthew’s sleep schedule is getting more normalized as well, for which we are very grateful. Most nights he does a 3 hour sleep stretch, eats and then does a 4 hour stretch. Overall, he’s not too fussy, and is best comforted by just being held. Thankfully, we do love holding our squishy baby!

Speaking of squishy, Matthew still has hypotonia (low muscle tone), which is typical for 4Q duplication. That makes him a bit squishier than other 6 week olds. His neurological system needs to continue to mature for the tone to improve. We have exercises recommended by OT to give him the opportunities to practice.

On the whole, Matthew is doing well right now. Although unique in his own right, he’s a pretty typical 6 week old.

We pray that Matthew meets his upcoming developmental milestones (either on time or even a bit delayed). We are not as concerned about the delays, as he was delayed in learning how to feed, but he is catching up. Completely missing milestones is our concern. Unfortunately we won’t know whether the milestone is delayed or missed until he hits it. I think we have come to terms with potential delays, I don’t think we are quite there yet if they are complete misses. But as we are trying to prepare ourselves for all the possibilities, I read a wonderful reminder on a blog of a family who have a little girl w/Angelman Syndrome. This is a small excerpt of the poem “The Child That Cannot Talk” from their blog (http://thelaughlinfamily-tx.blogspot.com/2010/01/child-who-can-not-talk.html)

I am the special child.

I am your teacher.

If you allow me, I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the special child.

So true!

Dark Cloud Departs

Before Alyssa was born, we were warned that newborns aren’t anything like the Gerber baby and a dark cloud would descend on our house with the introduction of said newborn and would dissipate at about 6 weeks. This warning was shockingly accurate with both Alyssa and Jackson. The first 6 weeks, we felt like we were in a haze, sleep deprived, struggling for balance, routine and ‘normalcy’. Life got a little easier after that first 6 weeks.

Although much about Matthew’s first six weeks has been different from our other experiences, I am glad to report the dark cloud is dissipating right on schedule. I’m not sure we recognized that it had formed over us, but we can see the difference now that the cloud is breaking up. Thank goodness!

To celebrate the cloud departing, we went to the Houston Children’s Festival today. Fun was had by all! Matthew slept through the majority of the event while I carried him in the Moby wrap. Alyssa and Jackson enjoyed meeting Ronald McDonald, Super Why, The Veggie Tales, and HEB Buddy as well as seeing the acrobats and jugglers, riding a few carnival rides, and eating some oh-so-good-but-bad-for-you fair food.

Today was a great day and we are thankful for it!

Thankful Thursday

As you’ve probably garnered from our previous posts, our outlook on life has changed since Matthew’s birth. We are more grateful for the everyday, and are now more consciously thankful for what we have. We have so much! We cannot ever convey the amount of thanks we feel for the prayers, positive thoughts, notes of encouragement, the gifts, the food, the offers of help, the ears we’ve bent, the shoulders we’ve cried on, the company, the information we’ve received, the lessons we’ve learned, the love we’ve felt, and much more. A million thank yous!!

We thank God everyday for…

Matthew
Alyssa and Jackson
Joy, Larry, Bryan, Karen, Will
My Mom and Dad
All of our extended family
Our friends near and far—From high school, college, book club, the neighborhood, etc.
Our parish family at St Edith Stein
Our HP and Accenture friends and colleagues
Matthew’s Medical Team
The friends and family of our friends and family
The teachers and directors at Alyssa and Jackson’s school
The Ronald McDonald House
The parents and siblings of unique kids as well as the unique kids
The “Love for the Hoy House” facebook group
The known and unknown followers of our blog
The gift of today

Thank you!!

Blissfully Naive

We are so grateful for the care we received at Texas Children’s, and the knowledge we gained, but it is a tough place to be. We were reminded of that this past Thursday. Darren and I (along w/Matthew) went to give our blood samples for genetic testing to see if we might be carriers of a ‘rearranged’ 4Q chromosome that led to Matthew’s duplication. Results won’t be back several weeks.

While we were waiting for our turn with the vampires, we sat in the same food court that we spent time in while we were there for Matthew’s 8 days. It was a hard reminder of the time we spent there, but it was also a glimpse into our uncertain future. In that food court, there are many unique kids…some that look different, some that act different, some with special needs. We looked around and thought “Will Matthew look like that? Will he act like that? Will he have those needs?” It is hard not to know, to wonder what the future holds, a future we are unfamiliar with.

Though in my mind, logically, we knew no more about what the future held for Alyssa and Jackson at 5 weeks than we do for Matthew. In the last few weeks, outside of TCH, we haven’t much thought about that future. We’ve just been in the here and now, enjoying Matthew in the stage that he is in.

This experience at TCH this past Thursday reminded me of crying on the way home from discovering that Matthew didn’t have thumbs. I was scared for what we didn’t yet know or uncover, but I also cried because I was scared for his potential future with the uniqueness we did know. Growing up ‘different’ is HARD. I worried that Matthew will be picked on, that he’ll fall into the wrong crowd, that he’ll suffer because he doesn’t fit in. I fretted for potentials that were years, many, many years, off.

When I spoke these words out loud, my best friend giggled at my naiveté . “Kate- that could happen to Alyssa and Jackson” Light bulb moment: Whoa…she is right! Typically developing kids are picked on, fall into the wrong crowd, suffer because they don’t fit in. I just never imagined that far in the future with Alyssa or Jackson. I was blissfully naïve, not looking much beyond the stage that we are in currently (newborn, infant, toddler, terrible twos, defiant threes, bossy fours).

As one of my friends pointed out, we’ve been in the ‘honeymoon period of kids’. It’s the period of time when the kids are still young enough to (somewhat) control, they think parents hung the moon, and peer pressure is usually a good thing (i.e. learning to use the potty or eat new foods). My worries for Matthew are worries I will likely have with all 3 kids, when we get to that point. So instead of worrying about Matthew's future years from now, I should wait and cross that bridge when we get there…with Alyssa, Jackson and Matthew.

This all was just another lesson to appreciate the moment that we are in today.